The impact of a structured one–day seminar on disease–specific knowledge, lifestyle habits and disease impairment in ANCA–associated vasculitis. Results of a randomized, controlled study

Garbe, N; Schäfer, Christoph; Pilz, Anna Caroline; Schmidt, Frank; Raberger, Katja; Wienke, Andreas; Keyßer, Gernot

doi:10.1080/03009742.2021.1972534

Cited by 5 publications

(5 citation statements)

References 29 publications

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“…Limited AAV-specific data are available for factors associated with cardiovascular and thromboembolic complications, 149–151 154 168 173 178 183 189 treatment of chronic and end-stage kidney disease, 159 163 202 205 family planning, 199 COVID-19 156 179 186 190 193 194 and patient education. 161 Some of the limited evidence is briefly summarised here:…”

Section: Resultsmentioning

confidence: 99%

“…The SLR identified one randomised, controlled study in which a 1-day educational programme for patients with AAV showed to increase AAV-specific knowledge compared with the control group. 161 …”

Section: Resultsmentioning

confidence: 99%

“…Other aspects of management of AAV Limited AAV-specific data are available for factors associated with cardiovascular and thromboembolic complications, 149-151 154 168 173 178 183 189 treatment of chronic and end-stage kidney disease, 159 163 202 205 family planning, 199 COVID-19 156 179 186 190 193 194 and patient education. 161 Some of the limited evidence is briefly summarised here: ► Kidney transplantation leads to a 70% reduction in mortality (RR=0.30, 95% CI 0.25 to 0.37) compared with non-transplanted AAV patients with ESKD, resulting from reduced cardiovascular events and death. 159 202 ► CYC treatment is associated with earlier menopause and primary ovarian insufficiency in premenopausal women with AAV.…”

Section: Vasculitis Vasculitis Vasculitismentioning

confidence: 99%

“…199 ► The SLR identified one randomised, controlled study in which a 1-day educational programme for patients with AAV showed to increase AAV-specific knowledge compared with the control group. 161 ► Patients with AAV are at higher risk for poor COVID-19 outcomes due to the treatments used, especially due to high-dose GCs, CYC and RTX. 190 193…”

Section: Vasculitis Vasculitis Vasculitismentioning

confidence: 99%

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Systematic literature review informing the 2022 update of the EULAR recommendations for the management of ANCA-associated vasculitis (AAV): Part 2 - Treatment of eosinophilic granulomatosis with polyangiitis and diagnosis and general management of AAV

Sánchez‐Álamo

Schirmer²,

Hellmich³

et al. 2023

RMD Open

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ObjectiveTo summarise and update evidence to inform the 2022 update of the European Alliance of Associations of Rheumatology (EULAR) recommendations for the management of antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV).MethodsThree systematic literature reviews (SLR) were performed. PubMed, EMBASE and the Cochrane library were searched from 1 February 2015 to 25 February 2022. The evidence presented herein covers the treatment of eosinophilic granulomatosis with polyangiitis (EGPA) as well as diagnostic testing and general management of all AAV syndromes.ResultsFor the treatment of EGPA, diagnostic procedures and general management 3517, 4137 and 4215 articles were screened and 26, 110 and 63 articles were included in the final evidence syntheses, respectively. For EGPA patients with newly diagnosed disease without unfavourable prognostic factors, azathioprine (AZA) combined with glucocorticoids (GC) is not superior to GC monotherapy to induce remission (LoE 2b). In patients with active EGPA and unfavourable prognostic factors, cyclophosphamide or rituximab can be used for remission induction (LoE 2b). Treatment with Mepolizumab added to standard treatment results in higher rates of sustained remission in patients with relapsing or refractory EGPA without active organ-threatening or life-threatening manifestations (LoE 1b) and reduces GC use. Kidney biopsies have prognostic value in AAV patients with renal involvement (LoE 2a). In the context of suspected AAV, immunoassays for proteinase 3 and myeloperoxidase-ANCA have higher diagnostic accuracy compared with indirect immunofluorescent testing (LoE 1a).ConclusionThis SLR provides current evidence to inform the 2022 update of the EULAR recommendations for the management of AAV.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Vasculitis Vasculitis Vasculitismentioning

confidence: 99%

Section: Vasculitis Vasculitis Vasculitismentioning

confidence: 99%

See 2 more Smart Citations

Systematic literature review informing the 2022 update of the EULAR recommendations for the management of ANCA-associated vasculitis (AAV): Part 2 - Treatment of eosinophilic granulomatosis with polyangiitis and diagnosis and general management of AAV

Sánchez‐Álamo

Schirmer²,

Hellmich³

et al. 2023

RMD Open

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“…Secondly, beyond distraction offered through the chat function as discussed above, the possibility of participating in a training course from home entails the risk of being distracted by everyday matters. A larger knowledge gain was demonstrated in educational seminars of the same length for granulomatosis with polyangiitis and systemic lupus erythematosus patients taught in-person in 2019 33 . In another study, 102 vasculitis patients were trained by experienced trainers in closed groups of 10–15 participants.…”

Section: Discussionmentioning

confidence: 97%

An online, two-day educational seminar had no impact on disease-specific knowledge in patients with systemic sclerosis

Garbe,

Raberger,

Wienke

et al. 2024

Sci Rep

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Systemic sclerosis (SSc) is a multifaceted disease, and its diagnosis triggers substantial anxiety and uncertainty for those affected. Currently, there are no valid data describing the impact of disease-specific patient education on the disease knowledge available. We created a two-day, online educational seminar to provide SSc patients with disease-specific information. The primary objective of the study was to observe the change in the disease-specific knowledge of the patients. A total of 118 patients were randomized into an intervention group and a waiting list control group. The change in knowledge was assessed using a multiple-choice test. The intervention group completed the questionnaire before, directly after, and 3 months after the seminar, while the waiting list control group also took the test 3 months before the seminar to rule out nonspecific learning. The primary outcome measure was the score difference between baseline and 3 months after baseline. The study was registered in the German Clinical Trials Register (protocol code DRKS00024915). The educational seminar resulted in a small, but measurable, increase in knowledge. While the two tests in the waiting list control group prior to the seminar did not show a nonspecific increase in disease knowledge, the intervention led to a numerical increase in knowledge (mean ± sd score difference 0.34 ± 1.31, 95% CI (− 0.23; 0.86), p = 0.26) that did not reach statistical significance. Multiple linear regression analysis showed that being a member of a self-help group (β = 1.12; p = 0.03) is a positive predictor of a higher disease knowledge. Although highly appreciated by participants, a two-day online seminar may not be the most appropriate format to generate measurable disease-specific knowledge. Self-help group membership was a positive predictor of a higher level of disease-specific knowledge prior to the educational seminar and should be recommended to every affected person.

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What is the potential of ChatGPT for qualified patient information?

Keyßer,

Pfeil,

Reuß-Borst

et al. 2024

Z Rheumatol

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Zusammenfassung Einführung Der Chatbot ChatGPT stellt einen Meilenstein in der Interaktion zwischen Menschen und großen, über das Internet zugänglichen Datenbanken dar. Er ermöglicht mit einer Kommunikation in Alltagssprache die Beantwortung komplexer Fragen und ist damit potenziell eine Informationsquelle für Betroffene rheumatischer Erkrankungen. Ziel der Untersuchung war es herauszufinden, ob ChatGPT (Version 3.5) in der Lage ist, qualifizierte Antworten zur Anwendbarkeit von Verfahren der Komplementär- und Alternativmedizin (CAM; Homöopathie, Ayurveda, Phytotherapie) bei rheumatoider Arthritis (RA), systemischem Lupus erythematodes (SLE) und Granulomatose mit Polyangiitis (GPA) zu liefern. Außerdem wurde untersucht, welchen Einfluss die Art der Fragestellung auf die erhaltenen Ergebnisse haben könnte. Methodik Die Befragung erfolgte in 3 Abschnitten. In Abschnitt A wurde eine offene Frage zu Behandlungsmöglichkeiten bei einem der 3 Krankheitsbilder gestellt. In Abschnitt B wurde allgemein nach möglichen Anwendungen für CAM bei einer der 3 Erkrankungen gefragt. In Abschnitt C wurden Applikationsmöglichkeiten für die 3 genannten Verfahren für jede Diagnose erfragt. In den Abschnitten B und C wurden die Fragen jeweils in 2 Modifikationen gestellt. Die erste fragte danach, ob das Verfahren überhaupt anwendbar ist. Die zweite Frage erkundigte sich nach konkreten Anwendungen aus den genannten Verfahren. Die Validität der Ergebnisse wurde anhand des ChatGPT Reliability Scores, einer 7‑stufigen Likert-Skala, ausgewertet. Ergebnisse Zu den offenen Fragen im Abschnitt A lieferte ChatGPT die validesten Ergebnisse. In B und C wurden zahlreiche CAM-Anwendungen vorgeschlagen, die nicht durch wissenschaftliche Evidenz gestützt sind. In diesen Abschnitten waren die Ergebnisse deutlich von der Art der Fragestellung abhängig. Suggerierte die Frage eine Anwendungsabsicht der CAM, entfielen häufig Hinweise auf die fehlende Evidenz, die Qualität der Antwort wurde in den meisten Fällen schlechter bewertet. Schlussfolgerung Die Antworten von ChatGPT zur Anwendung von CAM bei definierten rheumatischen Erkrankungen lassen eine ausreichende wissenschaftliche Evidenz vermissen. Zudem beeinflusst die Art der Fragestellung die Qualität der Aussagen erheblich. Eine kritiklose Anwendung von ChatGPT als Instrument der Patientenschulung kann derzeit nicht empfohlen werden.

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The impact of a structured one–day seminar on disease–specific knowledge, lifestyle habits and disease impairment in ANCA–associated vasculitis. Results of a randomized, controlled study

Cited by 5 publications

References 29 publications

Systematic literature review informing the 2022 update of the EULAR recommendations for the management of ANCA-associated vasculitis (AAV): Part 2 - Treatment of eosinophilic granulomatosis with polyangiitis and diagnosis and general management of AAV

Systematic literature review informing the 2022 update of the EULAR recommendations for the management of ANCA-associated vasculitis (AAV): Part 2 - Treatment of eosinophilic granulomatosis with polyangiitis and diagnosis and general management of AAV

An online, two-day educational seminar had no impact on disease-specific knowledge in patients with systemic sclerosis

What is the potential of ChatGPT for qualified patient information?

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